Thursday, October 27, 2011

EB Awareness week

This week is EB Awareness week and I would love nothing more than for all of you to learn what EB is and teach other people about it. Why is this important??? Well the more people who know what EB is the less likely a new baby will go undiagnosed causing more pain and trauma to it's tiny body. My heart broke as I read about Daylon's first few weeks of life. No one knew what was wrong with him, all his family knew was that every time they touched their baby he was getting more blisters and he was in more and more pain. Please read his story HERE.

Learn more about EB because if we could find a cure to this disease then sweet children like Tripp wouldn't have to fight for their lives when they have only gotten to live it for 2 years.

Are you asking yourself "what is EB?" click HERE to learn more and HERE to donate to to help find a cure.

I hope and pray that a cure is found soon.

This is me and Jonah. Jonah has EB and is 2 years old. He is just like any other 2 year old I know. He wants to play outside, blow bubbles, play with cars and wrestle. The only difference is that any or all of these activities could possibly cause painful blisters to form all over his body, or worse, rip his skin off.

Jonah is a joy to be around and is just like any other kid except his skin won't stay together.

I love this kid!

He has the brightest blue eyes!

And this is Ms. Ella she does not let her EB stand in the way of doing what she wants. She is in preschool and she is one of the only kids in her class that was able to cut out their valentine hearts without help!

I loved getting to hang out with Ms. Ella and her Mommy Katie. Katie was explaining to us how they bandage her and how often they do it. Katie wanted to show us the supplies they use but Ella started getting very nervous as her Mom got up to go get everything. Katie explained to us that Ella gets scared every time Katie gets up because she is afraid it is time to do her bath/dressing change. This broke my HEART! Ella lives in fear of bathing and dressing change time because of how painful it is.

Once her Mom explained to her that she didn't have to take a bath or do her dressing change she was very excited to show us how everything worked.

One easy way to help find a cure is to text BELLA (in remembrance of Bella) or TRIPP (in honor of Tripp) to 50555 to give $10 to PUCK (Pioneering Unique Cures for Kids) to further fund the research for the bone marrow transplants, our closest hope of a cure. see

Thank you for helping find a cure for these AMAZING kids!

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